Dictated to her Mom on July 7th, 2015.
Home has always been a place where I have always felt safe, comfortable and loved. The more that I sit here in my room, the more memories of the good times we have shared keep coming back! In the more recent times, since moving back with my health starting to decline, especially over the last year and a half, at a more rapid pace – thoughts of not being at home always really scared me. When we started home health aides caring for me, home was a little bit different in having someone else in the house along with the family, but I knew in the hours that they were there, it helped the family do things they needed and I had someone who could focus on my needs such as getting to the bathroom. It wasn’t until I was transferred to the nursing home that I realized how many needs I have. Since my days at Children’s Hospital, I have gone fully blind and I know my health overall is still declining.
It was even before Dad and Mom went on their trip, talks of being able to go back home for even one day were discussed, especially with my PT/OT. Mom and Dad wanted to take me home for the 4th of July to enjoy a barbeque picnic with the family. The day they came back from their trip I started working on safe transfers for safe transport from my wheelchair to the car seat by Dad. Mom and Marcia helped with the safe transfers to the potty chair. They all did great and now I was all set for the day! I started praying in advance for that day that nothing would hinder my going and that it would be one, like the others in the past, of great memories. God definitely answered those prayers and when I returned that next day, I started to see things of why I am here through different eyes.
Going home was a little weird at first. I could see it in my mind, but it was a lot of asking which direction I was facing and going by sense of touch. When we got inside, Dad said I should call for Muffy (the cat). Muffy, of course, still thinks home is my bed! So, mom wheeled me to my room so I could give him a petting. I started crying because I could not see him, but I could feel his ears and gave him a good scratch under his chin! I could also tell he has a very healthy appetite because he feels quite large! My room is the only thing I cannot envision. The only thing that remains is my bed, as everything else is at my room in the nursing home. So as we left there, I still envisioned the room as it used to be. The rest of the evening seemed to flow. I sat on the recliner chair with my feet up and the sun did not hurt my eyes as it did in the past. We sat out on the deck while Dad got the grill going and discussed the trees, flowers, birds and mom’s garden. When dinner was ready, I cannot tell you how amazing it tasted! Dad’s grill master skills, mom’s pasta salad and fresh fruit was all wonderful. I stuffed myself that night! It was GREAT! Even ended it with those obnoxiously delicious sugar cookies with messy blue frosting on the top. I had a cup of coffee that contained Almond Joy creamer—the best ever! As we finished talking and it got towards time to go, I guess there was a really pretty sunset. We took more pictures, which, of course, I will never see, but facing in the direction of Mom’s garden and trees—in my mind—I have a pretty good idea of what it looked like!
I really didn’t want to come back, but the next day I did some thinking. It took going home for me to see how much work I really do need now that I am fully dependent on everyone for everything. I know my family loves me with all their hearts and this has been just as hard on them as it has me. I know even if I were to be at home, they would do anything for me just like they did on the Fourth of July, but I now realize that my needs can be taken care of by others here too in order that when my family and friends come, I have more time to spend with them, especially now that communicating takes so much longer! I have also realized with living with half my things here at the nursing home and my other half of things at home—it’s a strange feeling to realize that this world really is NOT my home. Ginny Owens wrote a song called “If You Want Me To”. In it, she talks about how she doesn’t understand why she was brought to the place of where she is at this point in life. She says, “It may not be the way I would have chosen, when you lead me through a world that’s not my home, but You never said it would be easy, You only said I’d never go alone.” The more I sit and talk to God, I know I am not alone . . . the more I sit and squeeze Teddy and think of all my family and friends, I know I am not alone. “Hope” now has a different meaning, it is not necessarily where I sit, but how I view what my home in heaven will really be like and that brings a lot of comfort!
“Do not let your hearts be troubled. You believe in God; believe also in me. My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am.